Zachary Fenell on Living With Cerebral Palsy
Updated: Jun 25, 2021
Growing up with Cerebral Palsy (CP), a disability that affects a person’s ability to control their muscles and movement, definitely has its challenges. But Zachary Fenell, also known as the Cerebral Palsy Vigilante, has learned the importance of becoming confident in his differences and embracing his disability.
Fenell was born in the Greater Cleveland, Ohio area with Spastic Diplegia CP, which particularly affects his balance when walking. From a young age, he attended his neighborhood school and received an inclusive education. However, Fenell was constantly embarrassed by his differences. He struggled with a healthy social life, was unable to participate in gym classes, and didn’t know how to navigate conversations about his disability. He didn’t want to stick out or admit he needed extra tools to get along, so he kept his CP a secret.
Fenell was convinced keeping his CP under wraps was the only option to living a “normal” life, which he carried with him throughout high school. But, as time went on and he started attending Notre Dame College, he realized he had been putting up barriers by keeping his disability a secret instead of breaking them down.
“It wasn’t easy to cast away the idea of being embarrassed,” Fenell says, “but once I did, it built momentum.”
Fenell quickly took up the name “the Cerebral Palsy Vigilante” and made his motto “don’t blend in, blend out” as a reminder that differences are what make people interesting. From there, he wrote his memoir Off Balanced and began a blog and YouTube channel to continue to share his story in the hopes he could help other children feel less lonely and learn to embrace their disabilities.
In addition to sharing his own experience about living with CP, Fenell found comfort and inspiration in other people’s journeys with disabilities. John W. Quinn’s book Someone Like Me – An Unlikely Story of Challenge and Triumph Over Cerebral Palsy was especially eye-opening for Fenell. Quinn’s book discusses his personal journey with CP, focusing on how he kept his disability a secret as he served in the Navy for 20 years. For Fenell, it was extremely powerful to read something he could connect to. It made him want to challenge himself physically, which eventually led him to his next goal: becoming a marathoner.
Over several years, Fenell trained to run a marathon, starting with 5Ks and moving up from there. His original goal was to only run a half marathon, but after completing that his friend asked him, “What’s next?” The question surprised Fenell because he had never considered a “next,” but it inspired him to continue to push himself.
So, in 2017, Fenell ran his first marathon.
Fenell admits he never thought he could run a full marathon of 26.2 miles with his disability, but now realizes he was again putting up barriers by his own negative thoughts about CP. There’s still a lot of negative conversation around CP and other disabilities, but Fenell has learned to differentiate between real barriers and perceived barriers that only exist because of the negative connotations around disability, such as the idea that running a marathon would be impossible for someone with CP. He hopes to continue to address these negativities as he draws awareness to disability rights and works on writing another book, this one about his experience running marathons.
And Fenell truly believes his success in becoming a marathoner comes down to the fact that he embraced his disability. He used a cane while running to help with balance and asked to start the course early so he would have enough time to complete the full marathon. Without these accommodations, running a marathon might have been an impossible dream that evaded Fenell. But asking for accommodations for a disability is never something that should be avoided or denied.
Similarly, Fenell also believes asking for the proper resources, tools, and accommodations in schools is crucial to creating a truly inclusive environment. When he was in school, his schedule was strategically planned so he was never carrying too many books or walking from one side of the school to the other in a single period. Although this was a simple accommodation compared to the resources that are necessary to create fully inclusive classrooms, it showed him how important and easy it is to be inclusive as long as people are willing to try.
Fenell continues to advocate for embracing our differences, as well as being open and honest about those differences. “We need to find a way to celebrate our differences,” he says, “and in order to do that we need to be in environments where people are different.”
He knows negative perceptions about disability and CP won’t disappear overnight, but he thinks everything should be taken one step at a time – the perfect marathon mindset.
Kayla Kingston is the Communications Specialist for MCIE. A recent graduate of the University of Dayton, she loves reading, writing, and supporting all things inclusion.